Photographer Brenda Nasr explores chronic illness and its effects in a chilling series of images. Nasr, who knows chronic disabilities all too well, demonstrates the Spoon Theory through her imagery. The artist explains her work to us in her own words.
Tell me about this project and how it evolved.
BN: This project conceptualizes a theory created by Christine Miseradino called the Spoon Theory. In this model, a spoon represents a measurement of energy, and for someone with a chronic illness, those units are limited to just 12 spoons in a day (contrasted with able-bodied people who do not have a restricted amount of spoons). So, while many of us take for granted the amount of energy it requires to get out of bed, take a shower, brush your teeth and head off to work or school, for a “spoonie”, some of those things require a vast amount of physical and mental energy and can use up a handful of “spoons” depending on the day — sometimes even all of your spoons, if you even had any available that day. While most of us have days where we wish we would have slept longer or experience some physical depletion of some sort, the idea is that being a spoonie is not something that can be “fixed” with just a good night’s rest or a relaxing vacation and its impact on your daily life is extremely significant.
BN: Personally, I am an artist who experiences disability in the form of both non-corrective legal blindness from a condition called retinitis pigmentosa (the leading cause of blindness and which one day could take my sight completely) and a joint disease with frequent painful flare ups that can immobilize me for days at a time, especially after physical activity. Both of those things greatly impact my life, but they both put me into the “invisible illness” category meaning that most who look at me and work with me might assume I don’t have the kind of issues I do, particularly because I am not fully blind or “fully” disabled in an outwardly way (such as in a wheelchair, though walking aids do help me at times when I’m at my worst). This is why the Spoon Theory resonated with me and I wanted to shoot an editorial illustrating what life looks like for those with an invisible illness who struggle with chronic pain and the mental anguish associated with your body failing you most days.
What was the hardest challenge for you in conceptualizing this story?
BN: I mentioned to the amazing model, Nyasha Dixon, who helped bring this series to life (and one of the most talented models I’ve worked with) when she arrived that there was some type of cruel irony at work because an outing earlier that morning had left me severely depleted of “spoons” and my biggest challenge was simply mustering the physical strength to complete the shoot, particularly with regards to how to cover all of the angles I wanted to shoot in order to convey the story as accurately as possible. I essentially “borrowed” spoons from the next day by exerting myself and, as expected, spent most of the next day in bed for a shoot that was no more than two hours long.
What emotions do you hope to evoke in those looking at the photos?
BN: Solidarity, empathy, understanding.
What is the main message you hope to share through these photos?
BN: Trust disabled people. I can’t tell you how important it is for someone who suffers with a chronic illness (be that physical, mental or both) to be taken at face value, not with suspicion of exaggeration or attention-seeking. If you talk to anyone who suffers from chronic pain if they would rather be in bed or rather be doing what they loved, the answer would resoundly be the latter. No one wants to be restricted by their body or mind and it is insulting to assume that anyone is faking for underserved sympath. Also, trust that people with an invisible illness are their own biggest advocates and there is no one else more motivated to find solutions, so, even though well-intentioned, suggestions about what they can do to get better should not be the go-to response when you hear about their condition. Second, do not make assumptions. You do not know what people have or struggle with by looking at them and there is no such thing as “looking sick.” Respect disabled people as a whole, but also their efforts and time, especially because you never know what it took out of them just to show up.
Can you walk us through the story and the transgression of the photos?
BN: The series starts with the moment of the day when you have the most amount of spoons. For some spoonies, that may not necessarily be in the morning, particularly for some who are at their stiffest when they first wake up and before they have taken any medication, but for the sake of the editorial, the day would start out in the morning in a bathtub with all 12 spoons (pictured in a jar to the side of the bathtub). However, that still takes a unit of energy (a spoon in this case, but this could certainly require more for some people, and some may not be able to do this at all), so I’ve demonstrated that as well. I initially set out to cover different parts of the day and different locations, but my own body dictated the course of the shoot and I decided to honor that very real part of life as a spoonie. The model for the rest of the shoot was positioned throughout the bedroom in states of activity where spoons were still present (while the model was partially dressed or getting dressed), but slowly deteriorated to the point of spoon depletion without her being able to leave the bedroom or even the bed. The last shot of the editorial simply says, “I tried today, but I have no more spoons.”
Photo credit: Barbara Nasr.